Advocacy successes celebrated at National Alzheimer’s Dinner
At the National Alzheimer’s Dinner on March 24, part of the Alzheimer’s Association Advocacy Forum, leaders working to end Alzheimer’s were honored for their efforts and attendees celebrated advances made in the fight against the disease. A highlight of the festivities was emcee Wolf Blitzer, CNN’s lead political anchor and host of “The Situation Room with Wolf Blitzer.”
March 24, 2015
At the National Alzheimer’s Dinner on March 24, part of the Alzheimer’s Association Advocacy Forum, leaders working to end Alzheimer’s were honored for their efforts and attendees celebrated advances made in the fight against the disease. A highlight of the festivities was emcee Wolf Blitzer, CNN’s lead political anchor and host of “The Situation Room with Wolf Blitzer.”
Alzheimer’s Association President and CEO Harry Johns welcomed advocates from all 50 states by noting the many momentous victories of the past year, including the passage of the Alzheimer’s Accountability Act. This legislation will allow expert scientists at the National Institutes of Health (NIH) to directly communicate with Congress about the resources scientists need to achieve the primary goal of the National Plan to Address Alzheimer’s Disease: to prevent and effectively treat Alzheimer’s by 2025.
“This victory happened because of all of you — the best advocates any cause could hope to have,” Johns said. “Every single effort made a difference: a visit, a call or a letter to your elected official. An op-ed in your local paper or a post on Facebook. A meeting in your district or here in Washington. All of your actions were significant. All of them added up to this victory for those affected by Alzheimer’s, now and in the future.”
Bob Thomas, Alzheimer’s Impact Movement (AIM) treasurer and former member of the Association’s national board, presented the Alzheimer’s Association Humanitarian Award to Sen. Mike Crapo (R-Idaho), the lead Republican sponsor of the Alzheimer’s Accountability Act. The award recognizes public officials who have made a significant policy contribution to advancements in research and enhanced care and support for people with Alzheimer’s disease.
Crapo has firsthand knowledge of Alzheimer’s: His brother is in the late stage, and his wife’s mother died from the disease. He was grateful to be honored with the award but also deflected credit for his efforts.
“You’ve thanked me, but I want to thank you,” Crapo said. “(Passage of the Alzheimer’s Accountability Act) didn’t happen because I’m marvelous or that (co-sponsor Sen.) Ed (Markey) is marvelous. It happened because you are marvelous.”
Before introducing Rep. Peter Roskam (R-Ill.), who presented the Alzheimer’s Association Outstanding Advocate of the Year Award, Blitzer commented that Alzheimer’s disease advocates are having an impact in Washington.
“What you do is truly courageous and deserving of praise, from sharing your personal stories, to traveling to Washington, to all of the work you do in your home districts and states,” Blitzer said. “And your efforts are leaving an impression. People here in Washington are taking notice, just as I certainly have. In the crowded media marketplace, and even more crowded arena on Capitol Hill, it’s hard to break through and be heard. But you have, and I hope you will continue and even expand upon those remarkable efforts.”
Roskam spoke about meeting Advocate of the Year Cathy Perkowitz of Wheaton, Illinois, and her husband, Bill, who was diagnosed with younger-onset Alzheimer’s in 2006 at the age of 52. The couple kept up their friendship after Roskam was elected to Congress, and Perkowitz invited him to visit Bill at the care facility where he resides.
“Because of her invitation to see Bill, I was able to learn more, and the more I learned, the more I realized I needed to learn more,” Roskam said. “There’s a great temptation to take loss and be buried by it and defined by it and paralyzed by it. Cathy decided to do a different thing — she decided to redeem her loss.”
“This is such a great honor,” Perkowitz said. Her accomplishments include serving as an Alzheimer’s Association Ambassador, leading a top fundraising team at her local Walk to End Alzheimer’s® and participating in younger-onset caregiver support groups. “With my story and all our stories, we’ve been able to make a difference. The Forum provides so much energy to those with Alzheimer’s and their caregivers. There are many lonely moments dealing with this disease, but I’ve learned a lot on this journey.”
She also thanked her children, who were in the audience. “I want you to know how proud I am of Bill’s children: Nicole, Grace and Matthew,” she said. “They’re all success stories and they’re all part of Bill. I’m so proud that his children are here tonight to honor their father, who loved them more than anything.”
Thomas retuned to present the night’s second Humanitarian Award to Sen. Ed Markey (D-Mass.), a leader of Alzheimer’s issues on Capitol Hill. In addition to co-developing the Congressional Task Force on Alzheimer’s Disease, Markey was the lead House author of the National Alzheimer’s Project Act, the lead Senate sponsor of the Alzheimer’s Accountability Act and a cosponsor of the Health Outcomes, Planning, and Education (HOPE) for Alzheimer’s Act.
Markey announced that he and other bill sponsors will be reintroducing the HOPE Act. He said the legislation will give a new outlook to families diagnosed with Alzheimer’s.
“There’s something wrong in our country, and we’re going to change the way care is given to people with Alzheimer’s,” he said. “That’s what the HOPE Act is going to do.
“Failure is not an option,” he continued. “Our mission is to make sure that children look at history books to learn that there ever was an Alzheimer’s disease.”
Johns returned to present the Ronald and Nancy Reagan Research Award, which honors an individual who has demonstrated the courage and leadership shown by our former president and first lady in the fight against Alzheimer’s. This year’s recipient, Dr. Richard Hodes, director of the National Institute on Aging (NIA), is helping to make a real difference in the lives of millions of people.
Hodes, whose mother was diagnosed with Alzheimer’s in her 80s, pledged that NIA would continue to be “delighted partners” in undertaking research to combat the Alzheimer’s epidemic.
“The good news I can share is that there’s never been a time that research has been more exciting,” Hodes said. “People involved in this cause have created a new generation of hope to achieve the goal of putting an end to Alzheimer’s disease.”
Blitzer presented the Alzheimer’s Association Sargent and Eunice Shriver Profiles in Dignity Award, which recognizes individuals whose actions have promoted greater understanding of Alzheimer’s and its effects on diagnosed individuals, families and caregivers, to Lisa Genova, author of “Still Alice.” The book, detailing one woman’s journey with Alzheimer’s disease, was made into a film starring Julianne Moore, who won an Oscar for the title role.
When Genova was in her 20s and working as a neuroscientist, her grandmother had Alzheimer’s disease. Despite her background in medical research, Genova said she missed an opportunity when it came to her grandmother’s illness.
“I never asked her what it feels like to have Alzheimer’s,” she said. “Alzheimer’s is scary and depressing and tragic, but 5 million people have it and they have people that love them. It’s important to understand what it feels like. If we can understand what the disease feels like, we can stay connected with them for as long as possible.”
Genova added that she’s proud that “Still Alice” has played a role in bringing Alzheimer’s into the popular conversation.
“I wrote a book. It became a movie. It’s changing the world,” she said. “I want to thank all of you, because you’re all here making a difference and changing the world. Every single voice matters. Be heard.”
Blitzer concluded the event by wishing advocates luck on their visits to Capitol Hill on Wednesday.
“I’m inspired and impressed by all you have accomplished,” he said. “You’re unrelenting, passionate and informed about this cause and what it will take to end this disease. You’re prepared for your visits on the Hill and all of the expected and unexpected surprises that can come along with politics here in the nation’s capital. Better than any piece of paper or statistic or graph, you have your story — the one about how Alzheimer’s has affected your life and your family’s life. That story belongs uniquely to you and will leave an impression long after your visit.”
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